About me

From the AVM SURVIVORS web site: "Arteriovenous malformations (AVMs) are defects of the circulatory system that are generally believed to arise during embryonic or fetal development or soon after birth. Although AVMs can develop in many different sites, those located in the brain or spinal cord can have especially widespread effects on the body".
I am currently undergoing embolizations with Dr. Wayne Yakes @ the Swedish Medical Center in Englewood, CO every 8 weeks! Our lives are either planning a procedure, having a procedure or recovering from a procedure! The trick lately seems to be to keep the "bleeds" under control! My husband Mark is also my caregiver! He has become an expert wound care therapist, not to mention all around bundle of being just exactly what I need to get through the day and this ordeal we call an AVM! I recently finished 10 years of Embolizations w/Dr. Yakes and am finally ready for my next stage - Debulking and reconstructive surgery w/Dr. Robinson in CO - he is a dentist and plastic surgeon! Best advice to an avm patient - Stay positive and surround yourself with supportive people! Lots of faith, prayer and love are all crucial too!

Saturday, April 3, 2010

Hi Everyone! Happy Easter! The Lord Has Risen! And our former choir co-director (Now Father Greg Labus) would say the correct response was "He has risen indeed"! And now retired Bishop Carmody would add, "and He has shown Himself to Peter"! Well, it's not quite Easter yet, but almost! I hope all of you out there have special plans for the weekend whatever makes you happy! Whether it be attending Easter Services, Mass or spending quality time with your family, friends or just catching up with whatever you want to do!I've been wanting to blog again, but as usual, I've always got my hands full with something going on! I'll get to that later, but first I want to blog about what I wanted to start with! Got a call @ work the other day on my cell phone - and wouldn't you know, it was the ONE time I didn't have my charger with me, (as I had left it in the suitcase from the last Denver trip) so when I found out it was Kelly, Dr. Yakes P.A., I quickly told her my phone was about to die! She said she had Dr. Yakes there with her and he wanted to talk to me! Dr. Yakes wanted to apologize for having to use so much alcohol durig the embolization, but he was trying to prepare me for the surgery that was to follow in the next couple of months, where Dr. Hepworth would be doing the "debulking" under my chin! Dr. Yakes was trying to close off as many arteries as possible so there would be minimal bleeding when Dr. Hepworth went in there later! I always ask Dr. Yakes not to "hit me so hard with the alcohol" because then the alcohol sometimes traces out and then "burns" my skin, causing scabing and longer recovery time! I like to say something like, no more than 20 or so (is it millimeters?) of alcohol. Come to find, Dr. Yakes used like 38! YIKES! WHY? Later, Kelly, P.A., explained that about 1/2 of that was contrast dye, so that Dr. Yakes could see exactly where that alcohol was going to make sure he was getting what he needed ready for Dr. Hepworth later! Whew! That was a relief to hear that! As you know from my former blog entry - that swelling after this past embolization went inward (that's why I didn't look so bad in that one photo of me while I was in Recovery from one of my last blog entries). Dr. Yakes just wanted to tell me how bad he felt about what I went through with all that swelling! I told Dr. Yakes that the human spirit's desire to live and survive is incredible! I just felt bad for my sister Celia having to watch me suffer so much and having to stay in the hospital like five days, instead of the usual overnight stay! Of course during our conversation, my phone dies! Oh no! I immediately called Mark on a land line to his cell phone. Gave him Dr. Yakes office number and had Mark call and tell Dr. Yakes what happened! Mark got a hold of Dr. Yakes, but he told Mark he was pretty much done with what he wanted to tell me @ that point anyway, so no problem! I just thought it was pretty neat that Dr. Yakes took the time to call me and tell me how bad he felt about what he put me through! I told him I knew he was doing what he had to for what was best for me! I trust Dr. Yakes and now Dr. Hepworth with my life! They both have an awesome bedside manner! They truly care about their patients well being and work with them in every way possible! You know how some doctors can be - they don't have time for their patients, or care to listen to what their patients have to say or have time to answer questions! I wanted to include a photo of myself with Dr. Yakes from before one of my procedures! Unfortunately when our last computer crashed - there went a ton of photos from my Denver trips, so this photo I'm posting is not that old! Oh well! I just thought it was very classy and cool of Dr. Yakes to call me and let me know how he felt!Then I got a call from Donna, the lady that schedules surgeries in Dr. Hepworths office, letting me know I needed a referral from my PCP before my surgery mid April! I wasn't exactly sure of the date, so Donna confirmed it was set for April 16th! Put the brakes on! That is way too soon! I have too much going on in my life right now! I e-mailed a note to Dr. Hepworth and his P.A. Kris asking them if it was possible to move everything back @ least a month! Between the fact that once I ran out of steroids, I was feeling the pain again, bad! I mean on a scale from 1 - 10, I was almost @ 10! I was having to take my main pain killer - the Oxy, then an hour or so later, taking a Neurontin - a supplement to the Oxy .... then having to also take a Lortab several hours after that because I was still in pain! Yikes! Not to mention that the "debulking" surgery scared me to death, even though I trust Dr. Hepworth to know he knows exactly what he is doing - he is so awesome! So is Kris - they just make the patient feel that they are super special and thier BFF! First time we met Dr. Hepworth, he gave us a cell # where we could always reach him! So I told them I need to be ready for that surgery physically and psycologically! April 16th was too soon for me after how difficult the past embolization was! If all that wasn't enough, we've had our Hanzie in the hospital the last several days! It's all my fault too! We know better than to feed Hanz people food - but he's so darned cute and begs while I'm eating - he even touches my arm with his paw as if to say, "hello, I'm here and wanting what you are eating"! So, last week Monday, I was feeding him small pieces of that seasoned fajita meat from a local grocery store that we frequent and it was so delicious! Mark had cooked that out on the grill and we were having that with the works! Later that evening, we saw how much Hanz had to eat because he threw it up! Poor baby! Had Mark take him to the City Vet and was told to give him Pepto-Bismol. Course Hanz still threw up - took him to another Vet. they took blood so they could rule out pancreatitis! Got a shot of antibiotic, some antibiotic to take in liquid form and another liquid to "coat his stomach" and Hanz is still thowing up. Back to the City Vet and he recommended we take Hanz to Windsor Park Animal Hospital and we did! Had to admit him for several days so he could get nutrition and fluids on an IV as he didn't really have any nutrition going in! See photo of Hanz and I @ hospital! Brought Hanz home Thursay - hadn't been home but a few minutes when he threw up again! NO! Not his food, just bile. Mark picked Hanz up and drove him right back to the Vet.! They already had turned their phones over to the service! Mark pounded on the door until someone answered - the lady Vet was in, we had not met her yet, but she gave Hanz a shot that she said would burn, and Mark said Hanz did feel it with a little yelp! The shot was to soothe and settle his stomach, which apparently it did because Hanz has been fine, Thank God! Hanz had an inflamed pancreas so he is on a special diet of very easily digestible soft dog food for a month or two, until we can go back to his regular dog food and NO MORE people food! It's great having Hanz home again! We missed having him underfoot and his darling, cute self!So, I get an e-mail from Kris @ Dr. Hepworth saying there should not be any problem putting the surgery off a month or so! Whew! I need that time to regroup and process everything that has happened lately! Ok! I am going back to bed now! Hanz is here next to me and we both want to enjoy resting some more!As always,

We thank all of you for your prayer and well wishes! We will keep you posted on when my next trip to CO will be! I appreciate all of you! Take care and have a Blessed Easter Weekend!